Ok... here it goes

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Messages
2
Reaction score
0
Points
0
Hi everyone! My name is Amy...

I am a registered nurse at a local non-profit health clinic. My husband is in the Marine Corps and is currently sitting off the coast of Haiti :crying:
I also have 2 beautiful daughters.

Just 4 days before my husband left for his deployment he and I were grocery shopping. The entire time I didn't feel right. I kept telling him "I just don't feel well." I decided to just push through and try and get the shopping done. On the last aisle I put the ice cream in the cart, grabbed the handles... and that's the last thing I remember until I looked out the back of the ambulance at my husband. When I asked him what was going on, he said very calmly (something I bet everyone here has heard or said) "Honey, you had a seizure."

I must have asked the same question a hundred times... what happened... what happened...

From my husband's account after I grabbed the handles of the shopping cart I turned and faced the freezer said "Oh my God" and my eyes rolled back. He caught me and lowered me to the ground as another person called 911. He said I began tensing up, arms out in front. After about a minute of that I began convulsing and foaming so he turned me to my side. At that point he said blood spurted out of my mouth and just kept gushing where I had bit my tongue. The convulsing lasted about 3 minutes. Once I stopped shaking he said I tried to get up and was combative. EMS arrived and they helped me up on the stretcher and took me to the ambulance. They started an IV... and then I woke up. I lost 20 minutes... even the next 2 days I am unclear of. It all feels like a dream. In the emergency room the doctor wanted to load me up on Dilantin, but I refused until I see a neurologist (which I see them Tuesday, Jan. 26).

It has been 9 days now since the seizure and I haven't felt right since. I have dizzy and nauseated. It feels almost like vertigo. I can't get my thoughts straight... even when I stand up very slowly it feels like I am gonna fall over. I just can't shake this qweezy, weird, hungover feeling. Does it take this long to get over a seizure????

Even as knowledgable as I am about diseases and disorders, once it happens to you, you just don't know which end is up...

So, I look forward to picking ya'lls brains and learning everything I can about how to cope and live with the unknown...
 
Hi Amy, welcome to CWE!

I think the very first time you have a tonic-clonic seizure it IS like having been on a major bender, and then trying to recover from the mother of all hangovers -- your brain is in shock, your body's sore, emotionally you don't what the heck is going on... Even so, I would recommend that you call your doctor to be on the safe side. There may have been an underlying infection that provoked the initial seizure, or maybe you're reacting to whatever was in the IV. Better safe than sorry, especially if your husband isn't with you to keep an eye on you.

I hope you feel better soon. Feel free to explore CWE, check out the differnt forums, post. chat and vent as needed.

Best,
Nakamova
 
Hey Amy,
I think you need to step back and see what you have before you beat yourself up about the unknown. 2 great daughters, a husband who was by your side during such a traumatic experience, and medical help who will guide you towards the next step. Definitely all great things. (Although the medical help can be frustrating as well.) So before you set yourself up for another few days of teeth grinding, wall banging, sleep depriving frustration, take a few minutes for yourself and play with the kids, write a love letter to your military man, and relax with the knowledge that you are not the only one out there. I've only been on this site for couple of days (literally), but I know the people here will help.
Your post-ictal (post seizure) symptoms are not uncommon, at least in my experience. After a seizure, it can take me a full week to start to feel normal again, and thats with medication and days of relaxation, a.k.a. no kids, but I take it in stride. Talking to friends about what's going on really helps, and you never know, maybe you can get a free meal out of it. I wish you the best with your upcoming appointment. Hopefully you can find words of support here in the mean time. Try not to be too scared. It's not going to let you feel any better.
Best wishes,
Matt
 
Welcome Amy and God Bless you. I always started my seizures with "Oh My God" so strange. I've never had a Tonic Colonic (Grand Mal) seizure but it would take me several days to get over my seizures. Hangover is a great way to describe it. I also describe the missing time or the fact that we appear conscious during them like an alcoholic blackout. I'm very glad you decided to wait for meds until you see the Neurologist. Too many non specialized Dr's seem to think they can treat this. You don't need to rush into any Med and as a Nurse you''ll have great resources to decide whats right for you. It can be a long hall and many never know why they have them and have completely normal EEG'S and MRI's. This place will be a great source of information and support for you and your family. Enjoy your time here. Keep us updated on your Dr. visit.
 
Hi Amy and welcome to the group! Sorry to hear about your bad experience. We all know how scary things can be, and if you've never experienced any type of seizure, I can't imagine how petrified you must have been. I only ever had one Tonic Clonic seizure and although it was years ago, I do remember what a frightening ordeal it was. The recovery from it took a lot longer than that of the simple partials seizure that I used to have.

I think you made the right decision in waiting to have your neurologist appointment tomorrow, instead of just starting on meds. I wish you good luck with your appointment and please know you are not alone!!

One thing that I have learned over the years is to make sure to have a list of questions that you want to ask the doctor, as well as things you would like to discuss. It seems like once you get in to meet with him/her, your mind goes blank and afterwards, you realize you forgot a lot of things that you wanted to talk about.

Sincerely,
Josie :)
 
:cheers:

Welcome Amy. It sounds like you are taking all of the necessary steps to get started. Getting to a good neurologist (don't be afraid to change, they are not all good), taking charge of your treatment, and learning as much as you can about seizures.

Make sure you get plenty of rest to let your body recover. Tonic-clonic Sz wreak havic on your body.

Godspeed to your husband on his humanitarian mission. So sorry he had to go during your time of need. Hopefully knowing he is doing great things will help the hurt of him being gone. Glad you have your girls with you.

I have been to your part of NC quite a few times (Kinston). You have a beautiful state.

:cheers:
 
Hi Amy - Welcome to CWE
One thing to know is that everyone has a seizure threshold. There are those that are lower for many different reasons. Then stress, nutrition, chemical imbalance, etc can just let one rip.

My daughter began having them at the age of 14. I wish we had known more when it first happened, because I never would have introduced meds to her. They only made the seizures worse, and cause further problems along the way. For us it was a disastrous decision. Changing how we look at nutrition and what feeds the brain has been the best decision... for us.

BTW - my son is a Marine and stationed at Miramar, CA
 
Amy, Welcome. My husband is full time Air National Guard. Before you decide whether to go on meds or not I would ask the neurologist if there is a possibility that the stress from your husband's upcoming deployment might have brought this on. Stress can be a big factor for many people with seizures and you certainly were facing a stressful situation.
Good luck and keep us updated!
 
Hello!

Hi Amy! I agree with Kansas....check and see if the stress of the then upcoming deployment might have triggered your seizure. Anyone can have a seizure, and it's not necessarily diagnosed as epilepsy until you've had 2. As I said, anyone can have a seizure. For those with epilepsy, it's just easier to have them. :) See if sleep deprivation and the stress wasn't the triggers for this one. If it most likely is, your doc may not put you on any meds, but instead, have you try some stress management techniques.
 
Amy,

I first off need to say I started tearing up reading what happened to you, as I have been there also. To this date 10yrs later I still don't know why I started having seizures at 21. I haven't read the other replies, but here I go... It usually takes a few days for me to feel better after having a seizure. Since you are not on any meds, you are not having side effects from that. However, please stay aware of how you are feeling and if things are not feeling right, tell someone and lay down if possible. With my first seizure I had a 2nd one with 1 hour of the first and than was brought to the hospital by ambulance. If you need someone to talk to please feel free to message me.... I have 3 children myself (2 girls and 1boy)....

Hope your feeling better as I write this....
 
Hey Amy. Hugs.

I was diagnosed last year with epilepsy. I have partial seizures I have not had a grand-mal seizure since I was 8 (and that was the last seizure in my childhood they put down to febrile seizures... I actually thought they stopped when I was around 3)

Anyway...diagnosing epilepsy can be an absaloute pain. So, if you havnt yet had a diagnosis .. althought this was a really awful thing to happen ..people saw it and witnessed it will make that part easier.

I cant imagine how you feel, it only takes a few partial seizures to completly put me out for the day .. the auras are awful.

There are alot of good caring people on this forum who go through what you do.. and this is a great place for support. I am so glad you came here and were open.

One thing Ive had to do, is lower my stress as much as possible. Running around all day doing chores.. or exercise... or certain light will trigger me for sure. Perhaps you were really stressed about your husband going away (with GOOD REASON !!)

Since your a nurse Im sure you have given advice to epilepsy patients alot in the past, perhaps try and apply it to you, its awesome you have a medical background.. this can be put to good use and help yourself with your knowledge.

Get on the right meds, when you do .. dont stop them (I have done this and once i went back on they did not work as well)

I dont know if this is true, but I heard tonic clonic seizures are easier to control than partial.

Get a good Neurologist, dont settle for 2nd best, try to find one that specialises in epilepsy and who doesnt just "prescribe a pill send a bill"

I have friends in Haiti right now. They were there before the earthquake working in an orphanage.

You will recover. I remember after my status epilepticus last year and being loaded with meds I could barely do anything for days I felt so awful.

HUGS
 
Back
Top Bottom